Bone marrow donors may be compensated after ruling stands

A mother with three daughters who have Fanconi anemia sued the federal government for the right to compensate bone marrow donors. The U.S. Attorney General will not pursue the case with the Supreme Court, thus making a lower court's ruling law. That means bone marrow donors may now receive vouchers worth up to $3,000. NBC's Dr. Nancy Snyderman reports.

Certain bone marrow donors could soon be compensated for their life-saving stem cells after federal officials declined to take the matter to the U.S. Supreme Court, allowing a lower court order to become law.

At least one agency, MoreMarrowDonors.org, hopes to begin a pilot program offering up to $3,000 in scholarships, housing vouchers or charity donations -- but not cash -- in exchange for matching donations of marrow cells derived from blood.

“This decision is a total game-changer,” said Jeff Rowes, a senior attorney with the Institute for Justice, which filed the lawsuit three years ago on behalf of cancer victims and others seeking bone marrow matches. “Any donor, any doctor, any patient across the country can use compensation in order to get bone marrow donors.”

That may be the effect of the decision by U.S. Attorney General Eric Holder to forgo a high court review of a 9th U.S. Circuit Court of Appeals ruling that certain kinds of bone marrow donations are exempt from federal rules banning compensation.

Under the ruling, donors who provide marrow cells through a process similar to blood donation, called peripheral blood stem cell apheresis, can be compensated because those cells are no longer regarded as organs or organ parts as defined in the National Organ Transplant Act.

The ruling does not apply, however, to bone marrow obtained through traditional techniques that use a needle to aspirate the cells from the hip.

Although it applies only to nine states covered by the 9th Circuit Court, Rowes expects the effects to be felt nationwide.

The move met with praise from Doreen Flynn, 36, of Lewiston, Maine, the lawsuit’s namesake and the single mother of three daughters with an incurable blood disorder called Fanconi anemia.

She and other plaintiffs had argued that incentives are the best way to broaden the pool of potential donors and to help ensure that those who are matched follow through with the process.

Flynn's oldest daughter, Jordan, 13, received a marrow transplant this spring while 7-year-old twins Jorja and Julia may need transplants in the future.

“I’m overwhelmed by the decision and I’m grateful to be part of this case,” said Flynn. “With two kids who still need to go through transplants, this victory means hope for the future. With compensation, that means there is less chance that a potential donor will back out when called upon, which is a very real concern.”

But officials with the National Marrow Donor Program, which maintains a registry of 10 million donors, said they were disappointed that Holder didn’t take the matter to the Supreme Court and worried that the ruling would confuse donors about the issue of compensation.

“Our policy has always been to operate a registry of all volunteers,” said Michael Boo, chief strategy officer with the NMDP and Be the Match. “We will not list donors that have been promised compensation.”

That policy is also adopted by the Health Resources and Services Administration, or HRSA, which regulates bone marrow transplants in the U.S.

Permitting compensated donors would limit the NMDP’s ability to cooperate with international registries in 35 countries, said David Bowman, a HRSA spokesman. About 40 percent of blood stem cell transplants facilitated by the program involve an international patient or donor, he added.

The NMDP also argues that compensation will limit treatment options, divert money from a wider range of patients and, perhaps, decrease the quality of donations. It could skew volunteers’ motivations, perhaps encouraging them to be less than frank when answering the questions vital to ensuring a match, critics have said.

About 10,000 people need bone marrow transplants each year, but only about half receive them, according to the NDMP. The Institute for Justice estimates that about 3,000 die waiting for matches, but NDMP officials say there's no way to know that for sure because many factors affect a patient's death, not just the availability of matching marrow.

Not being listed on the NMDP registry could prove to be a blow to donors hoping to reach the widest range of potential patients, of course.

Rowes acknowledged that compensation could not begin immediately and that many details remain to be worked out.

“I’m not saying that we may not have to fight with HRSA and the registry in the future,” Rowes said. “But they are profoundly mistaken if they think they can use their authority as stewards of information that is the property of the American people to interfere with what the courts have said is the lawful use of that information. We’re not backing down.”

Mother of three Doreen Flynn has filed a lawsuit against the federal government over the National Organ Transplant Act of 1984 which makes it illegal to buy and sell organs, including bone marrow. NBC's Dr. Nancy Snyderman reports.